Understanding the experiences of, and preferences for, virtual patient and public involvement and engagement and patient empowerment during the COVID-19 pandemic: lessons and solutions for meaningful involvement from an original research study.

Problem

The COVID-19 pandemic has changed how people approach their lives and healthcare. To understand meaningful person-based care, the role of patient and public involvement and engagement (PPIE) and co-production methods are essential now more than ever.

Managing three or more long-term conditions remains a challenge primary care faces in terms of how best to support older people (65+ years) with complex needs. We also know that patient empowerment can be difficult to measure and we still don’t know how this might look in practice.

The EMPOWER study (Establishing new Methods to utilise Patient reported feedback for Older people With multiple long-term conditions to increase EmpoweRment) aims to establish the use and acceptability of digital methods in patient reported outcome measures (PROMS) feedback, to co-produce a patient empowerment person-based feedback intervention. The study has significant virtual patient and carer and public involvement and engagement embedded throughout to ensure the early intervention results in meaningful impactful outcomes.

Approach

Eleven older patient, carer and public partners (age range, 65 - 93 years), invited from an established PPIE group and a local older people’s PPIE network, formed a virtual, diverse and inclusive, patient, carer and public group to EMPOWER.

Following the co-production method, we are exploring with the group, the use of digital methods in PROMS measurement and feedback, to understand what supports or prevents their use in primary care, to inform the components of a person-based empowerment feedback intervention.

Findings

Individuals’ perspectives and PPIE experience (‘professional patients’, ‘fresh contributors’), digital experience (new to relatively experienced to using computers and non-digital users), digital restrictions (use of new visual aids), accessibility (digital, non-digital methods) and COVID-19 experiences (shielding) enabled us to collate crucial insights on understanding the experiences of, and preferences for, virtual PPIE and patient empowerment. We found out what matters to each contributor living and/ or affected by multiple long-term health conditions, and how this impacts on levels of virtual involvement and impact.

Consequences

We are currently working on a number of case studies to EMPOWER, which will showcase practical aspects to our co-produced work, such as, what meaningful PROM and proxy-PROM feedback might look like for an older patient and carer, living and/ or affected by, multiple long-term health conditions, including visual impairments and rare conditions (Arnold Chiari syndrome).

A checklist of ‘Top Tips’ for researchers and primary care practitioners to use, such as offering choice to people about how they get involved, to ensure meaningful involvement within the delivery of person-based primary care, will be available to attendees.